In our time on ICU we met lots of new people in a very similar situation to ourselves. People we wouldn’t have ordinarily met, from different walks of life. We often found ourselves asking the question, ‘Why us? We did everything right! We don’t deserve to be here!’
Speaking to the other people on ICU, we found this to be a shared sentiment. Making friends on ICU or just generally in a hospital is a slightly tricky issue but in so many ways it was vital.
We’ve made friends for life at Alder Hey. Not just cardiac families. Isla’s first boyfriend was in ICU, a week older than her, and we spent New Years Eve with his parents and the nurses watching the fireworks over The Lord Nelson pub… there were talks of calling an unnamed little man next to Isla, Nelson, to mark the spectacle but it didn’t stick. There are many little bonding experiences which we won’t ever forget.
The most common thing I heard at hospital was, ‘if you need anything, you know where we are, just shout’. It’s a very easy thing to say and I know it’s meant well, but in reality it’s such a difficult situation to manage that I found keeping outside friendships a challenge in itself. The day Isla was taken off for surgery for her broviac line, in a very delicate state, Kerry and I sat in an interview room. My parents had come up for the day, as they couldn’t cope being away from the hospital while she went for the surgery, and it was about 6 hours before we saw them. They sat in the ICU waiting area for most of the day without seeing us or Isla. That’s not too bad because it was family, but it’s slightly beyond the remit for friends. There were many days when we cancelled people coming over to see us as we either knew Isla was going to have a bad day or hospital life was so busy we just wouldn’t have the time to really see people.
This is where hospital friends played such a big part in our journey. People I saw every day. People I’ve seen in their pyjamas at 3 in the morning during a McHouse firedrill. People who look like they’d slept as little or less than me. People who could really relate to our circumstances. We didn’t talk to all the people we saw. There were some characters: Beat Headphones Man, The Lunchboxers (Hi Andrew and Katie!) and Expresses while she sleeps, to name a few. However, these were people you’d run in to every day so there was no pressure around if Isla would have a bad day it would have been a wasted journey, they were here anyway.
Kerry made lots of friends in ICU queuing up to use the 1 breast pump of ICU. I was a little bit concerned when Kerry eventually made it to Isla’s bedside with a bottle of expressed milk, telling me that Rob had showed her some good techniques to help stimulate the flow! Of course they claim this wasn’t a literal demonstration but desperate times, desperate measures! She was shown how to use the breast pump initially by our ICU nurse after all!
We met people whose little ones unfortunately didn’t make it. It was extremely difficult as, selfishly, you put yourself in their shoes. Even seeing someone carrying their child down the corridor of ICU is heartbreaking. You automatically get pulled into the emotion of the moment. I don’t want this to sound insensitive because it’s far from it, but at times I had a sense of survivors guilt. I hadn’t suffered the loss but I could certainly empathise. When asked how Isla was doing, I felt bad saying she was doing well, I felt bad saying she’d had a bad day, after all comparatively it wasn’t a bad day.
On the other side of things, we found that with some people getting better was a competition, and you begin to resent the fact other children are improving while we were back at square one. We were always happy to see babies we ‘knew’ progress to HDU, the ward or home, but ultimately we just wanted that to be Isla making those steps.
Human nature means that different people react differently in a highly emotional situation. We saw the full spectrum, and also went through it ourselves. Chatting to people waiting to go into ICU we quickly learned that not everyone had the same outlook as us; most of the time we were trying to be positive, with negative thoughts lingering in the background. However, it only takes one person to sow a seed of doubt. We learnt to never say, “I’m sure they’ll be fine!” as the nature of critical care means they are in a critical condition and it could go either way.
Having said all that, we were very selective and made friends with some great people who helped us through some dark times. It’s a whole different friendship to my other friends; that isn’t to say they are lesser friends but it’s a relationship built on experiences not many people have. There are friends I can casually chat to about some of the horrific things that happened at hospital and they don’t bat an eyelid. Lots of people say to us, ‘I don’t know how you do it’. I can only liken it to times when I’ve said to people, ‘I can’t imagine what you’re going through’, and I genuinely can’t. I think only people who’ve lived the situation can really understand the depths of despair that you sink to.
As an example: Our friend’s little girl was rushed in to theatre for an emergency heart procedure. They were in an interview side room on ICU, not knowing what was going on, if their baby girl was going to survive. We knew they hadn’t eaten, probably didn’t feel like eating, and certainly wouldn’t be leaving to go get something to eat. We took them some Dairy Lea Dunkers to pick at. To this day they both swear it was the best meal they’ve ever had. When your friend describes Dairy Lea Dunkers using the word ‘orgasmic’, you can:
1. Appreciate what a bad place they were in.
2. Will never look at a stick of bread with gloopy cheese the same ever again.
We’ve also made some good friends and useful contacts through joining Facebook groups relating to Isla’s condition. One thing we’ve found using online forums; everyone on there is an expert (myself included… although in my case it’s true 😉 !) It’s important to bear in mind: 2 people, same condition, same medication, one will improve and get better, the other might deteriorate. This is the nature of the beast and often cannot be explained.
Everyone has a different experience. We listened to other people and their advice but never took it as gospel.
It may sound sad but I now spend half my time on my phone chatting to other parents of children with Lqt or rhythm issues. I chat to them more than my real life friends. They understand the constant threat level I feel and we can reassure each other and build the confidence that so many people take for granted with their children. It’s not that I’ve replaced my old friends, or don’t think they’d understand properly, but it’s just so good to know I’m not alone with the complications of every day life and a scary baby!
To all my new online or hospital friends – thanks for listening to me rant so often!
To everyone else – thanks for being there for me even though I’ve been a bit crap!